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Author
Topic: new here and some questions (Read 5367 times)

hello everyone. here's some background info on me. so im a 25 year old gay male living in new york and i recently found out that i am HIV positive. basically my biggest fear in life up until this point. i had gone a long time without getting tested (5 years) and when i finally went in a few months ago they told me I was positive. They ordered a blood test but i never went back for my follow up appointment because I was too freaked out and the timing was awful so I never found out what my counts were or anything. That was on September 11 (not a good day for anyone I guess). I kept putting off dealing with it until a got a flu thing a few weeks ago and it really freaked me out. I've always had a very strong immune system and usually only get sick once every few years. This time, being sick and knowing I was positive I got really scared and decided that I just needed to take charge of this situation and get my life back and stop being afraid to face something that will only get worse the longer i wait.

in the past two months i've been doing a lot of research and making some changes in my life. i quit smoking cigarettes, drastically cut back on drinking, started working out 3-5 times a week and began taking multivitamins. It's really been a wake up call about how I've been living my life and how I need to grow up and take charge of things, which i suppose is kind of a blessing. before I found out I was positive i was quite a heavy drinker and smoker.

tomorrow im going to the GMHC to get some blood work done and talk to a counselor about my options and everything. it's pretty scary for me but i know i need to face it. the thing i'm worried about is probably what every newly diagnosed person worries about. my counts. what if they are very low? having HIV is bad enough but if it is already progressed to AIDs levels I'm going to be devastated. I know it's impossible to tell now but I was wondering if anyone can help me speculate? Judging on how strong my immune system has always been I would guess my t cell counts were fairly high to begin with. The longest I could have been positive is 5 years. Which i know normally isnt long enough for the t cells to drop that much. I've read that excessive alcohol use and smoking can speed things up, so im worried about that. I dont really have any symptoms of anything except my bad skin (acne and dry spots) which i've always had. Ok this is getting quite long, but I wanted to introduce myself and my situation thoroughly.

tomorrow im going to the GMHC to get some blood work done and talk to a counselor about my options and everything. it's pretty scary for me but i know i need to face it. the thing i'm worried about is probably what every newly diagnosed person worries about. my counts. what if they are very low?

Then you are going to listen to your doctor and do what he/she says Ė get yourself ready for treatment when the time comes.

having HIV is bad enough but if it is already progressed to AIDs levels I'm going to be devastated. I know it's impossible to tell now but I was wondering if anyone can help me speculate?

No its pointless. All your speculation is natural and human but its useless at best and often counterproductive. Stress and fear that adds nothing to your life. The brass tacks basic fundamental to living well with HIV is going to regular checkups and taking the medical treatments if and when required.

Judging on how strong my immune system has always been I would guess my t cell counts were fairly high to begin with. The longest I could have been positive is 5 years. Which i know normally isnt long enough for the t cells to drop that much. I've read that excessive alcohol use and smoking can speed things up, so im worried about that. I dont really have any symptoms of anything except my bad skin (acne and dry spots) which i've always had.

You are overly obsessed with a connection between drinking and smoking and fighting HIV. And complete guesses about your supposed "strong immunity"

Your body is going to deal with HIV based on its genetic immunity and NOT your spirit, your mindset, your drinking, or your smoking or whether you got strep throats and the flu in the past.

Smoking is bad for you for a million reasons for instance it causes heart disease and lung disease. You are smart you know that already. Its got little to do with how your body is or isnít dealing with being HIV+.

Drinking --- well --- just like smoking. Make your decisions about that based on ALL known dangers of drinking. No need to drag HIV into your drinking problem, or vice versa.

You do NOT need radical lifestyle changes as a condition of fighting HIV. You may need to quit drinking to live and work well. You quit smoking, you know the benefits.

Many people avoiding dealing with HIV make this mistake. Thinking some radical lifestyle shift is necessary to deal with HIV. Sorry no. Yes its important and necessary but no. No if it is adding to the stress and making them avoid treating HIV head-on rationally and with cool science.

HIV is a virus that is well known and well treated by medical science and we shouldn't think that ANYTHING even comes close to HAART as being important in controlling an HIV infection.

Well anyway, at leasts that my view on things. Ask doctors and science to deal with the HIV. Know what your fun sins (smoking drinking drugging whatever ones people have) come with as risks, and don't confound it all together.

« Last Edit: November 15, 2012, 05:39:40 PM by mecch »

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ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Welcome to the forums. I'm glad to hear you're taking charge of your health. Hearing you have HIV is a huge blow. Most young people don't think about their mortality, and a disease like HIV slams your mortality into your face. It is hard to deal with for so many of us. I've been poz for what I'm pretty sure is 11 years, but have only known my status for 4. It is impossible to gauge what your counts will be. Some progress quickly and many others don't. I've had doctors say there is just no way I could have been infected for 11 years with my counts and still not on meds. There are some who have been poz for over 20 years and still not on meds.

It is good you quit smoking. While it is true smoking has little to do with disease progression as far as lab counts go, smoking does increase your risk of respiratory illnesses and bacterial pneumonia. We are already at increased risk for pneumonia, but smoking increases that risk. Once you get a few labs under your belt, you'll begin to know where you stand and whether meds are necessary now, or whether you have time to begin to prepare for that at some point.

Be sure to be checked for other things like syphillis and hepatitis. If you're not already vaccinated, your doc should be vaccinating you for Hep A and B. And, don't forget the flu and pneumonia vaccinations. It is a lot to digess. Just putting it out there, because besides exercise and vitamins, these are very important to good health.

I get being freaked out - I am six months into this and I was pretty freaked out the first few months (ok, maybe a little longer than that). In retrospect, all my worry and anxiety was really counterproductive. One thing that helped me was seeing a counselor that specializes in HIV. Others have mentioned that attending support groups has really helped.

I know it sounds trite - but it does get easier with time, as you educate yourself and start to manage your health (like knowing your numbers, educating yourself on meds, getting the vaccinations as Ted suggested, etc.).

The good news is that you are in a city with great medical care and you are taking action to manage your health.

Welcome - I love your attitude -- you let this shocker motivate you to do some things that are good for you for the long haul and the short haul, namely your wallet -- smoking's expensive these days!!

As to your concern about the pending numbers, you'll be getting numbers on a quarterly basis, so first time out, schedule two minutes maximum in your head for total devastation and then move on. No matter what they are, you'll deal.

Thanks for the welcome! I'm getting ready to go in to get my blood work now. I'm pretty nervous but I'm glad I'm going to know what I'm up against and start facing it instead of just living every day blindly and afraid. i'll keep you all posted!

We are all here to support you. Please be strong and hang on there. HIV medication these days can do wonder for your HIV infection. Even though you have AIDS it doesn't mean that it game over. You can get better just listen and follow what the doctor told you. Keep taking you medication and take good care of yourself.

One week until i find out my counts and stuff. Gosh i've never been so nervous. I keep freaking myself out researching stuff online and now ive convinced myself I have just about every OI out there, lol. I know this is all counter productive and stupid but i just cant help it. Hoping to get some peace of mind either way when i get my results and start taking meds. I guess i just wanted to write this because it's thanksgiving and even though I'm scared and nervous i'm thankful that i know my status and that i'm making steps towards a healthier life. i've probably been positive for years now and never known for sure, so this year i'm at least thankful that i'm finally mature enough to have gotten tested and can say that i know my status!

Beware of Google! If you're not savvy it's awful for freaking you out. My boyfriend is a sucker for it, every day he's read something new online which has worried him. If you're going to do it then try to get your head round the scientific papers and documents, they're more likely to be an accurate representation rather than scare stories.

I think you deserve massive respect for making some positive changes in your life, taking control in that way can only be a good thing.

With regard to freaking out about about getting your results, I dunno... Pretty much because I'm doing the same...

One week until i find out my counts and stuff. Gosh i've never been so nervous. I keep freaking myself out researching stuff online and now ive convinced myself I have just about every OI out there, lol. I know this is all counter productive and stupid but i just cant help it. Hoping to get some peace of mind either way when i get my results and start taking meds. I guess i just wanted to write this because it's thanksgiving and even though I'm scared and nervous i'm thankful that i know my status and that i'm making steps towards a healthier life. i've probably been positive for years now and never known for sure, so this year i'm at least thankful that i'm finally mature enough to have gotten tested and can say that i know my status!

Hey Tex, I did the same thing. This is to be expected but here is what actually happened:

1.) I did not have any of the OI's I thought I did.

2.) I drove my doc and his assistant "nuts" with what-if's and questions until they got a handle on the disease.

3.) I eventually had to get some psych help to deal with my depression and the "what ifs."

My suggestion is to let your doctor do the doctoring. Be honest about how you feel, symptoms you are having and be sure to address your mental health. HIV is a BIG DEAL, however, it is totally manageable and a tendency to "read too much into it" can cause an entirely different set of problems.

For me, personally, once I stopped doing internet searches about HIV/AIDS and spending hours on WEBMD and Google, I started to mentally process things better because I simply relied on the professionals I hired to handle this. Anyway, hang in there, it does get easier to process and manage.

Logged

Diagnosed in May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

TRIUMEQ - VALTREX - FLUOXETINE - FENOFIBRATE - PRAVASTATIN - CIALIS

Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

I met with a social worker who is going to help me with everything. shes really great and im so thankful there are people like her out there to guide me through everything. it looks like i have a few weeks full of appointments. went in and got my confirmatory western blot test today. ive known i was poz for the last few months but something about reading it on a piece of paper made it really hit me. it was the only time i've really cried or anything since any of this happened. well, i have a big drs appointment on monday to get all my counts and initial bloodwork done. i didnt really understand that the western blot wasnt going to give me my counts. so much to learn! this is all so scary but im glad im getting it done. i just hope i dont have syphilis or hep now!

hi tex,there are support groups available at the center. go to their web site and check it out. they have one every sunday and a couple more during the week days. I don't go to GMHC but i know someone there if you need counseling. he might be able to help you with that. i'm sure your social worker or your nurse could set you up with their support group thing.another thing you can do is go on to yahoo and look for SIN NYC group. it is Strength in numbers group. you will find some helpful info there and meet others. let me know if you need any help.find something to focus on. whether it is work or study, keep yourself busy and occupied. that helps a lot.

SIN is more what I would call an "affinity" group for social activities, not a place to discuss HIV issues for someone newly diagnosed. I'm not saying it doesn't have value, just that it may not be what you are looking for strictly as a support group.

forgot about the friendsindeed. they are really great. you should try different groups and see which one you feel most comfortable with. i have different experience with each group. SIN NYC has a bulletin board similar to this forum but more local. i didn't know anything about hiv when i was diagnosed. when i reached out to them they hooked me up with one of the best doctors in the city and also gave me a lot of info on support groups. when a friend of mine in midwest was getting sick cause he couldn't afford meds, i posted it on SIN NYC board and a total stranger got me 3 bottles of meds my friend needed for free. once i felt better about my new condition i started going to their social meetings and made some poz friends. the whole experience with SIN NYC helped me a lot from the beginning.

Click on "groups" and you'll find support group listings. There are a handful of forum members here that go there and say it's a great facility. It's very "one stop shopping" if you look at the [url-http://centerforcare.org/services/]myriad of services[/url] offered.

Thanks for the advice! The CCC looks like a great place. As it stands i'm seeing a doctor at mt. sinai which is also where my social worker is. not sure what program this is under really but was just referred there by the GMHC. the hollistic approach at the CCC seems nice and ive always wanted to try acupuncture!

i have my big dr appointment tomorrow where they're going to take all my blood and stuff. pretty nervous. ive put off dealing with this for so long that each appointment makes me so anxious! before i walk into the building i always have this urge to just bolt and forget about it; i know how stupid that is. i'm hoping that after some time this feeling will pass and i wont get so anxious about all the doctors im going to be dealing with for the rest of my life. i've always been scared of doctors! i guess it also helps to know that after the next two appointments (initial check up and blood work and follow up when i get put on meds) i'll get a little break before any others. going to multiple appointments every week for the past few weeks has done nothing but put my status in the forefront of my mind at all times.

my appointment is at 10 which is early for me as i work until midnight usually. im worried that my counts will be lower because of the whole morning thing, but it is what it is i suppose. i guess im just nervous about that pesky <200 AIDs diagnosis. What if my counts are 199 only because of the time of day!? i know im writing a lot on here but i need to vent somewhere. im trying to keep it all in this one thread though so i dont bomb the forum every day with all my craziness.

I was diagnosed with AIDS. 6 months on meds and I would have, in theory, been diagnosed with HIV (the numbers had reversed considerably). The bottom line is treatment and meds WORK. Try not to get hung up on numbers yet. You have a long healthy way to go

Logged

Diagnosed in May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

TRIUMEQ - VALTREX - FLUOXETINE - FENOFIBRATE - PRAVASTATIN - CIALIS

Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

i have my big dr appointment tomorrow where they're going to take all my blood and stuff. pretty nervous. ive put off dealing with this for so long that each appointment makes me so anxious! before i walk into the building i always have this urge to just bolt and forget about it; i know how stupid that is. i'm hoping that after some time this feeling will pass and i wont get so anxious about all the doctors im going to be dealing with for the rest of my life. i've always been scared of doctors! i guess it also helps to know that after the next two appointments (initial check up and blood work and follow up when i get put on meds) i'll get a little break before any others. going to multiple appointments every week for the past few weeks has done nothing but put my status in the forefront of my mind at all times.

I read a lot of media, and I'm not sure where this was, sorry, maybe even here in the forum? But something about how in Britain HIV+ people may end up living longer than certain HIV- populations because HIV+ people are in regular routine health care.

My father hated doctors and I can't help but wonder if his cancer had been detected early, he would have had a better chance of beating it, or at least a longer life. Meaning - yeah - going to doctors has BENEFITS.

HIV+ people with routine checkups are pretty closely watched and finally its not just about HIV.

It seems to me doctors are looking at my whole system on a regular basis. I don't want HIV but I can't change that. I take the medicine, I needed it pretty quickly. HIV is controlled by the medicine.

I changed my ID doc a year ago. My first doc, and my new one, so thats two experts, told me point blank that HIV was NOT the major challenge to my health or longevity.

For example, my new doc said point blank I couldn't be the light smoker I was. Don't smoke.

You will go to the doc, get your HIV under control, and it would be a good idea to LOOK AT THE BRIGHT SIDE, the benefits, of being under regular health care.

First of all, thank your lucky stars you have access to health care. Billions around the world do not. There are probably still millions of people around the world who face a shitty awful HIV/AIDS future, due to the lack of health care.

Secondly, going forward, you will be regularly observed and tested. Not wishing any other health crisis on you, but one day there might be one - but you will be "plugged in" and maybe it will be caught early. Or even prevented. And you'll have a great record of your system over the years. Doctors will know a lot about you.

Thirdly, HIV care can become quite routine and you won't need all that many appointments, after awhile. Maybe 2x a year. And who knows what the future holds.

I am sorry that doctors make you anxious. Do you really think its the doctors? Or is it health issues that make you nervous? I would explore this a little bit, if it does not get any easier and more routine, soon enough.

My mom told me that my dad felt that way about doctors because he grew up in such a poor family, that doctors and health care were both 1) completely unaffordable, and 2) therefore - far from routine and 3) caused anger and resentment in the family because of financial hardship and sacrifice.

My dad was the only kid to go to college and become middle class by that route, and so I grew up standard 60s, 70s, 80s middle middle class. Not rich. Not even upper middle class. Not poor, though I remember money was tight. But everything was routine and secure feeling for us - including dentists, orthodontists, pediatricians, shrinks if nec, etc etc etc. (Not to be political, but I think so much is, that was a time in the USA when the middleclass had tons of employee sponsored, complete health insurance!) But my dad, though he was living middle-class, still let his teeth rot, and still avoided all checkups with the doctors. It was unfortunately embedded in his worldview, I think.

Of course, I don't know if any of this touches you, or your situation. But really, think about why health care might make you anxious. Why do docs scare you? Or is it the HIV? Or illness? And how can you manage this going forward?

Personally I can think of a lot of reasons to be scared of illnesses, but not all that many to be scared of doctors or healthcare.

« Last Edit: December 05, 2012, 05:08:41 AM by mecch »

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ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

I know my fear of doctors is unreasonable and definitely something i have to get over. I'm literally about to walk out the door to get my first set of numbers. Wish me luck! I'll post the results later.